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Formative Research Report 2006 Y E A R Formative Research Report 2006 Stigma and Discrimination Faced by Women Living with HIV/AIDS A REPORT FOR BREAKTHROUGH BY PRASTUT CONSULTING SUPPORTED BY DFID AND NOVIB Table of Content Acronyms and Abbreviations 1 Executive Summary 2-10 Section 1: Background 11-24 Section 1.1: Vulnerability of Women in India 11 Section 1.2: Feminisation of HIV in India, the Ground Reality 12 Section 1.3: Spread of HIV among Women in General Population 14 Section 1.4: Causes Attributed For the Spread 14 Section 1.5: Stigma and Discrimination towards HIV/Aids in India 15 Section 1.6: Increase in Stigma and Discrimination against Women Due To HIV Aids 16 1.6.1 Hypotheses towards Increased Vulnerability of Women Due To HIV Aids 16 Section 1.7: Impact of Stigma – Violation of Human Rights 18 1.7.1 Stigma and Denial of Healthcare and Treatment 18 1.7.2 Stigma and the Right to Privacy and Reproduction 19 1.7.3 Stigma and the Right to Liberty and Security of Individuals 20 1.7.4 Stigma and the Right to Employment and Livelihood Opportunities 20 1.7.5 Stigma and the Right to Freedom from Inhuman and Degrading Treatment 21 1.7.6 Self Stigma: An Outcome of Violation of Rights in the HIV Context 21 Section 1.8: The Way Forward 21 Section 1.9: The Breakthrough Intervention Program 22 Section 2: The Formative Research 25-32 Section 2.1: Objectives of Formative Research 25 Section 2.2: Research Objectives and Methodology 25 Section 2.3: Research Methodology 26 Section 2.4: Research Location 26 2.4.1 Prevalence of HIV in Three States 26 Section 2.5: Criteria for Selecting Location in the States 27 2.5.1 Selected Districts 27 2.5.2 Selection of Aurangabad in Maharashtra 28 2.5.3 Selection of Udupi in Karnataka 29 2.5.4 Selection of Kanpur in Uttar Pradesh 30 Section 2.6 Demographics of State and Districts Selected 32 Section 3: Research Process 33-37 Section 3.1 Tools Used For Qualitative Research 33 3.1.1 Transect Walks 33 3.1.2 Qualitative In-Depths 33 3.1.3 Focus Group Discussions 34 Section 3.2 Sample Size 34 Section 3.3: Criteria of Selecting the Respondents 34 Formative Research Report i Section 3.4: Method of Respondent Contact 35 Section 3.5: Process of Selecting the Respondents 35 Section 3.6: Training Of Research Team 36 Section 3.7: The Research Process 36 Section 3.8: Data Collection Process 37 3.8.1 Data Collection 37 3.8.2 Findings from Research 37 Section 4: Perception of Stigma and Discrimination-The Community View 38-53 Section 4.1 Perception of Stigma and Discrimination – The Community View 38 Section 4.2: Transect Walks 38 4.2.1 Aurangabad City – Areas of High HIV Prevalence 38 4.2.1.1 Transect Walk Findings - Mukundwadi Area 38 4.2.1.2 Transect Walk Findings - Waluj Industrial Area 39 4.2.2 Kanpur City – Areas of High HIV Prevalence 39 4.2.2.1 Transect Walk Findings - Transport Nagar 39 4.2.2.2 Transect Walk Findings - Rail Bazaar 39 4.2.3 Udupi Town – Areas of High HIV Prevalence 40 4.2.3.1 Transect Walk Findings – Kundapura 40 4.2.3.2 Transect Walk Findings – Shankarpura 40 Section 4.3: Community Interviews Undertaken 41 Section 4.4: Community Interviews – Information Areas 42 Section 4.5: Findings - Awareness of Cause 42 Section 4.6: Fear 44 4.6.1 Indicators of Fear 46 Section 4.6: Blame 47 4.7.1 Blame Indicators 49 Section 4.8: Shame 49 4.8.1 Shame Indicators 49 Section 4.9: Judgement 50 4.9.1 Judgement Indicators 51 4.9.2 Disclosure Indicators 51 Section 4.10: Enacted Stigma 52 4.10.1 Enacted Stigma Indicators 52 Section 4.11: Summary of Findings of the Three Research Locations 53 Section 5: Stigma Indicators: Community Level 54-82 Section 5.1: Community FGDs 54 5.1.1 Probe Areas for Community Groups 55 Section 5.2: Awareness about HIV Aids – Findings 55 Section 5.3: Source of Awareness about HIV Aids 59 Section 5.4: Fear Indicators Validation 63 Section 5.5: Shame, Blame and Judgement Indicators Validation 67 Section 5.6: Judgement and Enacted Stigma Indicators Validation 72 Formative Research Report ii Section 5.7: Disclosure Indicators Validation 75 Section 5.8: Media Exposure 77 Section 5.9: Message Suggested 80 Section 6: Perception of Stigma and Discrimination – The Family Stand 83-94 Section 6.1: Perception of Stigma and Discrimination – The Family Stand 83 Section 6.2: Method of Contact with Families of WLHA 83 Section 6.3: Support of Family Members – A Hidden Motive? 83 Section 6.4: Family Members Interviewed 84 Section 6.5: Family Members – Probe Areas – The Mlha Myth Probed 84 Section 6.6: Awareness of Cause 84 Section 6.7: Fear 85 6.7.1 Fear Indicators 86 Section 6.8: Blame 87 6.8.1 Blame Indicators 89 Section 6.9: Shame 89 6.9.1 Shame Indicators 90 Section 6.10: Judgement 90 6.10. 1 Judgement Indicators 92 Section 6.11: Enacted Stigma 92 6.11.1 Enacted Stigma Indicators 93 Section 6.12: Stigma Indicators for the Family 93 Section 7: Stigma and Discrimination the WLHA Side 95-108 Section 7.1: Stigma and Discrimination - The WLHA Side 95 Section 7.2: Method of Contact with WLHA 95 Section 7.3: WLHAs Met With (All Names Have Been Kept Confidential) 95 Section 7.4: Awareness of Causes 96 Section 7.5: Fear 98 7.5.1 Fear Indicators 99 Section 7.6: Blame 99 7.6.1 Blame Indicators 102 Section 7.7: Shame 102 7.7.1 Shame Indicators 103 Section 7.8: Judgement 103 7.8.1 Judgement Indicators 104 Section 7.9: Enacted Stigma 104 7.9.1 Enacted Stigma Indicators 107 Section 7.10: A Comparison of the Three Locations: Mind States Of WLHAs 107 Section 8: Conclusion 109-120 8.1 Interplay between HIV, Gender and Stigma 109 Section 8.2 The Loner 109 Section 8.3: Combating Stigma at the Community Level 110 Section 8.4: Combating Stigma at the Family Level 110 Formative Research Report iii 8.4.1 Marital Home: 111 8.4.2 Natal Home: 112 Section 8.4: Combating Stigma at the Individual Level 112 Section 8.5: Stigma Indicators Identified At the Community, Family and WLHA Level 113 COMMUNITY LEVEL INDICATORS 114 FAMILY LEVEL INDICATORS 117 WLHA LEVEL INDICATORS 119 Annexure 121-152 A1: Sec Classification A2: Framework for Assessment of Stigma and Discrimination A3: Instruments for Exploratory Research A4: Respondent Profiles Kanpur A5: Respondent Profiles Udupi A6: Respondent Profiles Aurangabad Formative Research Report iv Acronyms and Abbreviations PLHA: Persons living with HIV/AIDS WLHA: Women living with HIV/AIDS MLHA: Men living with HIV/AIDS SEC: Socio-Economic Classes UT: Union Territory STI: Sexually Transmitted Infections Formative Research Report 1 Executive Summary The Rationale Discrimination against women in India is most evident in the declining sex ratio: from 972 females per 1000 males in 1901 to 933 females per 1000 males in 2001. The girl child is deprived of proper nutrition, healthcare and education, given her lower social status in society. Unequal treatment and increased vulnerability make women hapless victims of HIV/AIDS. Nearly 40 percent of HIV-positive people in India are women, according to UNDP. The UNDP states that nearly 80 percent of HIV infections among women in 2005 were the outcome of women contracting the disease from their husbands. Interplay between Gender and HIV Positive State Gender plays a key role in the nexus between HIV-related stigma, moral judgement, shame, and blame. Given women’s lower standing in the social hierarchy, this study has developed some basic hypotheses in a bid to understand the dynamics of gender in HIV- related stigma and discrimination. The hypotheses emerge from the central theme that “women are more likely to be stigmatised in India where women’s powerlessness is glorified in a pativrata (dedication to the husband) image”. Key among these hypotheses are: the family plays the biggest role in women’s discrimination, a woman’s economic status determines her access to support from the family, women are blamed for their spouses’ infection, HIV-positive women are stigmatised as being loose characters. Ultimately, lack of family support, ridicule and stigmatising behaviour of the community, denial to financial independence and a means of livelihood are factors that give rise to internal stigma. Internal or self-stigma is also exacerbated by the Indian belief in ‘karma’ and destiny. Objectives of the Research The research addresses the stigma felt by Indian women in different socio-cultural contexts within the country and identifies indicators to measure the stigma. 1) Understanding of awareness, attitude and behaviour of community towards HIV/AIDS and towards PLHA 2) Examine the forms in which HIV/AIDS-related Discrimination and Stigma is experienced and manifested at the levels of individuals, families, and institutions (community) towards the WLHA 3) Investigate the role of gender in the causes and consequences of stigma. 4) Identifying the stigma and discrimination faced by MLHA (Men living with HIV AIDS) and WLHA (Women living with HIV AIDS) in the community and evaluate whether differences exist between attitude and behaviour towards MLHA and WLHA 5) Identification of relevant stigma and Mapping of stigma indicators with rights of women Formative Research Report 2 Research Methodology A formative research has been conducted using qualitative research methodology.
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